Research is crucial to helping us further our understanding of POTS and other forms of dysautonomia and to identify ways to prevent or cure these conditions. That's why DINET is parterning with the Patient-Centered Outcomes Research Institute (PCORI) and the University of Pittsburgh on their MyPaTH Story Booth Project. The project aims to help researchers better understand the dysautonomia patient experience with illness, coping and the healthcare system.
Why did DINET choose this project? DINET has been collecting and sharing the stories of our patients and caregivers for over a decade. Our shared experiences make an enormous impact on other patients, especially newly diagnosed people or people sharing new or worsening symptoms. There is enormous comfort in learning that you are not alone.
One of the most common experiences specific to POTS and dysautonomia patients is the difficulty in getting a diagnosis, finding a physician that believes you, understands you and even knows something about the disorder. The other commonality is the invisible illness aspect. We just look so good while feeling so bad. This can lead to a lot of misunderstandings with family and friends and sometimes a lack of support. Our member stories and forum give DINET members a chance to share those stories with each other, but it does not give us a direct platform to share with the medical community and researchers - Story Booth does!
Participating is simple.
- You must be 18 or older
- You must be able to read and speak English
- There is a pre-interview survey, a post-interview survey and one 20 minute interview about your experiences. The phone interview is audio-recorded by the Story Booth team. The entire process takes about 45 minutes.
What to Expect:
A MyPaTH Story Booth interview includes a one-on-one conversation with you after you complete a brief questionnaire that asks basic demographic questions such as; your age, gender, education, etc. The conversation will last up to 20 minutes and will be audio-recorded.
You will be asked to tell a story related to your experiences as a patient (your illness or interactions with the health care system for example) or your experience as a caregiver.
A MyPaTH Story Booth member will explain the process to you and review the consent form. They will go over the extensive security used to guard your information, and answer any questions that you have about the project or the process. They will remind you not to use any identifying information (your name, a doctor's name, the name of a hospital, etc) Each recorded interview is checked through and any identifying information that is accidentally used, will be "bleeped" out before the interview is added to the database.
This is an IRB approved research project.
Edited by edriscoll